Happy Halloween!

Lydia's first costume was a princess fairy type thing. It was WAY too small, but she really liked her wand, as you can see from this video.

Can't really say what she's supposed to be here, but I like it!

Lydia, looking autumnal.

Pumpkin!

DOROTHY! This costume was made by the wonderful Monica Tucker (and her daughter Leah made the basket)! Lisa knew I really wanted her to be Dorothy, but all the costumes were too big. This made Halloween AWESOME.

Ruby slippers!

Going to see Grandma and Grandpa Huff at Trunk-or-Treat at Calvary!

Lydia with Lisa as the Tin Man and my dad (behind Micah) as a Flying Monkey.

Dorothy, Toto, Scarecrow and Tin Man!

There's no place like home.

Sorry for the lack of update lately. Everything here has been pretty stable since last Tuesday. That was Lydia’s last big seizure. We’ve seen slight twitches here and there, but she’s been fine since then - almost a week! She’s been awake and moving around more than usual and making more little baby noises as well.

As she has more and more good days, Micah and I are getting braver about going places. We took her to my parents’ house for my sister’s birthday dinner on Saturday and then to Micah’s parents’ house for his brother’s birthday dinner on Sunday. We’re even doing better about taking her places when she’s having seizures. Last Tuesday we took her for a walk and halfway through, she had a seizure and stopped breathing. We pulled the stroller over, let her know we we were there with her, let it pass and resumed our walk. My, what a skewed version of normal we’re living in.

So, things have been good these past several days. Once Lydia gets her vaccinations, we’ll be looking forward to taking her more places with us. We came to a point last week when we realized we were tired of sitting around the house waiting for her to die. It’s time to live life like we’re going to have her for a long time because, honestly, anything is possible. She is an amazing little girl and we’re proud to have a daughter like her.

Here are some pictures of Lydia meeting her Great-Grandma and Great-Grandpa Huff!

Coffee House

The past two days have been awesome. Lydia hasn’t had any big seizures for the past two days! We’ve gotten braver about going out and bringing her with us, and that’s bringing us great freedom and relief from being in the house all the time. The crazy was starting to set in, so this came at a good time.

Tonight was a wonderful night. For those of you who don’t know, I’ve worked for the past five years at a small Christian school called Christian Heritage School in Trumbull. It’s the school that Micah and I both graduated from. Tonight, a group of students organized a benefit coffee house in honor and support of our family. Several of the students and even some of the faculty came and performed songs and poems. They had a time of prayer for us followed by a time of worship. One of the boys who headed the evening up said they didn’t want to mourn Lydia’s condition, but celebrate her life.

We didn’t get a chance to say thank you - not that I wanted the chance in front of everyone because I would have wept like a small child. So, I’m going to say thank you on the internet.

Boys whose idea this was and who were in charge of orchestrating the evening, Nick and Pete (and anyone else who might have helped that we don’t know about), THANK YOU. Thank you for caring about our family and wanting to do something to help us and for doing it in a way that showcased so many people’s gifts, as well as bringing glory to God. Tag on Geoff and thanks for the beautiful worship tonight. You sang two of our most favorite songs: “In Christ Alone and “Be Thou My Vision.”

I know there were a lot of other people who did a lot of other things like baking, making coffee, setting up, doing sound, recording, taking money and all things like that. Thank you all so, so much. Everything was lovely and so well done.

Thank you to all who performed. We’re sorry we missed some at the beginning, but we are looking forward to watching the video with Lydia here at home! You made us smile and laugh and we’ll take all of that we can get!

Thanks to all the parents as well for coming and helping set things up and for raising such wonderful children that do such kind things for others.

Listen up, all you teenage types - I am thankful for you. I wish I could begin to explain to you what a blessing this evening was for us. I wish there was more that I could say, but please know that we love you so and your love for us makes us stronger and encourages us. Thank you for loving us and our sweet baby girl.

Stripes!

Another beautiful day for a family walk.

Pumpkin painting!

Two Months

Dear Lydia,

Two months ago today you were born. That was the most wonderful and frightening day of my whole life. Nothing was what we thought or dreamed it would be, except that your face was just as beautiful as I imagined it would be. You didn’t move. You didn’t cry. But you were so lovely.

Two months have gone by. I should be writing all the new things you’ve learned to do in two months, but that isn’t the kind of baby you are or the kind of letter this is. I want to tell you what I’ve learned so far from being your mama. Everyone always told me that having a baby would change my life forever, and you, in two short months, have done just that.

I have learned how to give a tiny little girl a bath. The first bath I ever gave you took about forty five minutes. I’ve got it down to about ten now. OK. Maybe twenty. It’s one of my favorite things to do with you because you wake up so much and look all around. You move your arms up over your head and look like you’re about to fly away. You also rock a towel with a duck head better than any baby I’ve ever seen.

I’ve learned how to hold and snuggle you just right so that you can breathe the best. I put you on your side, snuggle you into the center of my chest, just high enough that your head tucks in under my chin, and hold my breath to feel your heart beat.

I’ve learned how to tell when you’re about to have a seizure. You start to breathe really hard and fast and pull your legs up. I’m glad that I learned this, because I can scoop you up and hold you close so you won’t be as scared. And so I won’t be as scared.

I’ve learned more from you about unconditional love then from any person I’ve ever met. When I was pregnant with you, I began to learn about my own ability to love, but I also learned so much about the way God loves me. Your birth wasn’t the end of those lessons. I can’t imagine there being more love than the love I have for you - I would give all of my life to give you a chance to have one too - but every time I look at your face, I remember the deep love the Father has for me. This love has become more clear to me in many ways, but it’s too much to tell you here.

I’ve known for a while how it feels to be sad and even completely heartbroken. But I begin now to know what sorrow feels like. In knowing that, I’ve also learned what joy in the midst of sorrows is really all about.

You’ve taught me how to live each day for itself, knowing that no days are promised to us.

You’ve taught me that God doesn’t promise us health or even healing on this earth. But He promises to be with us until the end of the age. Call me crazy, but I KNOW He is with you. I can see it in your eyes. Looking in your eyes, I know He’s with me too.

I don’t know if I can say yet that I’m thankful for the way you are because of what it has taught me. I don’t know if I’ll ever be able to say that and truly mean it. But, I know that I am thankful for you and that these past two months, though the most difficult, have also been the best of my life.

Happy Birthday, sweet baby.

Love,
Mama

Post Open House Update

You people are awesome. Thank you so much to all of you who came to meet Lydia. One of our nurses, Janice, said that Lydia does so well because she knows how loved she is and yesterday was an incredible testament to how loved one little girl can be. I wish there was more to say than thank you, but there’s nothing else to say. So, thank you.

Thanks also to everyone who wanted to come but didn’t because of sickness. We really appreciate you honoring our attempt to keep Lydia as healthy as possible.

Special thanks to our family and friends who did lots of preparing for everyone to come.

Oh hey, it SNOWED last night! What in the world was that? You all are doubly awesome for trekking out in freakish weather.

She’s had a few episodes today where her oxygen dropped, but she’s still hanging in and we are too.

Thank you again and again - even if you didn’t come, thank you for your love and prayers. We’re constantly amazed and overwhelmed by the support from our various communities...and the communities of the people in our communities. Yeah. Figure that one out.

We didn’t really take pictures of the open house, because I’m the picture taker and I had a super-cute baby to hold. But, here are pictures of Lydia in her party dress!

This is how she was almost the entire open house.

This is how she was the entire car ride home.

Pretty party dress!

There were tights and a petticoat involved.

Of course, she was wide awake as soon as I put her in her pajamas.

Open House Tonight

OK, people. We’re on for tonight. I know it’s cold and rainy and maybe you feel like too many people are probably going to be there, so you shouldn’t bother coming. BUT YOU SHOULD TOTALLY COME. OK? OK.

Just real quick, she’s having a little bit more of a rough day. She’s had a couple seizures with desats today, but nothing too severe. We just want you to be prepared. The seizures aren’t particularly scary to watch. She stops breathing and there is a jerking motion in her legs or face. She’s been recovering fine from all the episodes so far, and we’re expecting that will continue through this evening.

Again, we really hope to see you.

Jane! Get me off this crazy thing!

Our child is insane. Or incredible. It’s difficult to tell which at this point.

After three days straight of seizures, last night (much to everyone’s surprise) she had no noticeable seizures and no desats. Today, she had some slight facial twitching, but again, her oxygen levels were perfect the entire time. We are baffled. Baffled, but happy to have more unexpected good days.

To add to the insanity, our pediatrician came to check on Lydia a couple days ago and noticed that her liver seemed bigger than it was the last time she was here. This had us concerned because liver failure is a very real possibility and we want to keep Lydia as far away from that experience as possible. Today we had some blood drawn and we were thinking that they were going to come back and tell us that her liver was failing and internal bleeding was imminent. SURPRISE! Her liver is still in great shape and she’s not in danger of liver failure at this point.


To quote our friend Lisa Avery after hearing this news, “I WANT OFF THE ROLLER COASTER!”

We feel the same way.

We’re still feeling hopeful for the open house tomorrow. Of course, I’m feeling a little like we’re setting all of this up like we would set up for a visiting dignitary, but whatever. We really want people to come see her (and us!) and she’s got a really pretty new dress to wear to impress you all. Check back tomorrow for confirmation, but I think we’ll be on.

Our God’s love and compassion for us is overwhelming and we continue to be thankful for each of these days, knowing that each one is a blessing.

Smooches from Aunt Lisa!

Simon loves Lydia.

All bundled up for a walk!

Update - October 12

So, remember that last update when I was all, “Lydia’s doing SO well!”? All day yesterday and through the night she was having seizures accompanied by desats. She’s had one every hour for the past twenty four hours. We did not get much sleep last night. It’s hard to know when one of the desats will be the last one and we want to be with her through everything.

In spite of the not good day, we’re going to try to proceed with plans for an open house. It will be held on Thursday, October 15 from 6pm-8pm at my parent’s house. Even though we know it might inhibit several people from coming, we’re asking that if you’re sick you not come. We’re also requesting that no children under the age of twelve come. We’re trying to keep sickness and germs away from her, since any kind of cold would be pretty devastating to her.

We’d also like to ask that no one bring gifts. I know this is terribly contrary to what people do when they come to see a baby, but we really just want to see you and have you meet Lydia - gifts aren’t necessary. And, if we’re being honest, getting gifts for her makes us sad.

We’re hoping a lot of people will come to meet our sweet girl. Like I said in a previous note, we’re amazed how many people love her without even knowing her. All of these plans are contingent on how well she does the next few days, especially Thursday. We’ll update on Thursday and ask that you check to make sure we’re still on.

We’re really excited to give Lydia this opportunity to meet everyone and to have you all meet her. If you have any questions, shoot me or Micah a message or e-mail and we’ll hopefully get everything figured out.

Hope to see you Thursday!

Beautiful girl.

Pretty polka dot dress!

Daddy got me dressed today!

Snuggling with Aunt Monica!

Update - October 10

This little girl of ours is a perpetual surprise. When I posted last, she had had seizures all the day before I wrote and was desating frequently the day I wrote. Friday (yesterday) and today she has been perfect. She is having a difficult time breathing every now and then, and she’s working really hard to breathe sometimes, but she hasn’t had any seizures. Just when we think it’s time to panic, she surprises us with more good days.

In that, we’re trying to figure out the best way to live our day to day lives. We’ve both gone out in the past couple of days (for about an hour at a time), but aren’t sure exactly what to do with ourselves. We’ve been spending all of our time in the house with her, and as much as we love being here with her, we also kind of want to be OUT doing things with her - like normal people. Since we aren’t normal, we’re having a tough time figuring things out. I for one feel like I’m starting to lose it a little. I feel like we’re just sitting around waiting for her to die, and while we know that’s going to happen at some point (some days it feels closer than others), we don’t know when and I want to get as much out of these days as possible, especially her good days.

Since she seems to be doing better these past couple of days, we are more optimistic and are entertaining thoughts again of an open house. We’re still working out the details, but stay tuned for more on that.

In other news, Micah is sick. He has an ear/throat infection which has had him slightly out of commission for the past couple of days. We’re hoping he’s on the mend. I, in turn, now have a sore throat. Despite us both getting plenty of sleep, we’re exhausted and seven weeks of hospitals and sick little baby girl is starting to take its toll. Please pray for restored health. We don’t want to miss any time.

Otherwise, things here are pretty normal...you know, normal-ish. My favorite part of the day is bedtime because we snuggle into the rocking chair and I read her a story. We’ve read Peter Rabbit, Horton Hears a Who, The Velveteen Rabbit, Where the Wild Things are and a couple of Babar books just to name a few. It’s such a wonderfully normal thing to do. I put her in her crib and Micah and I say a prayer for her. I wind up her singing giraffe stuffed animal and we watch her fall asleep. In those moments, I forget how bad things are and can only thank God for the good gift He has given us in her. We’re a family the way He meant us to be.

He is good and we are thankful.

PS - I’ve managed to lose my camera cord but when I find it, there will be more pictures. Promise :)

Update - October 8

Lydia has been having seizures off an on for the past two days. Today has been better - she had a ton yesterday. She rarely lost her airway, just a lot of twitching. It’s pretty awful to watch, as she has no control over her body. We don’t really know what to expect at this point. Everything is up to her.

If I’m being honest, we’re exhausted. We’re sleeping at night (and some during the day) thanks to our wonderful hospice nurses who stay with her when we need to sleep, but we aren’t feeling rested. The emotional expenditure of wanting to spend every waking moment with her but still preparing ourselves for what we know is coming is starting to take its toll. Turns out, loving something you know you can’t keep is a pretty hard thing to do. And then I look at her and think, “How could we NOT love her?” She is the sweetest, most beautiful thing I have ever seen.

We want to say again how thankful we are for all of you who are praying for our girl and who feel love and a connection to her without ever having met her (or us in some cases!). We very much wish that everyone could meet her, but we’re feeling the need for the three of us to be together. It’s not that we don’t want people to see her, we are just finding it so much more important for our family to have time.

Every moment of every day, God is good. We are blessed to have Lydia home. Each time I look at her, I’m amazed by God’s grace and kindness to us in the midst of this time. We don’t understand and struggle at times, but we cannot doubt His love for us when we look at her face.

Thank you for your continued prayer. Blessings to you all.

A few pictures from the past couple days

Snuggly.

Matching! :)

The socks are my favorite!

This was the first thing I bought Lydia when we found out she was a girl.

Pretty pink dress!

So, this is pretty much what we spend all of our time doing. This is about as much as she moves around and about as awake as she gets. After our horrible days at the end of last week, we've been so thankful to have so many good days.

She had some seizure activity a little this morning, but nothing too severe. It's hard to not panic when we see seizure activity, but we're doing OK so far. Every time she moves her hand or looks up at us, we are thankful.

If I can get a video of it, I'll put up our new favorite thing. We have a toy that's a puppet frog and when you close the mouth, it makes a croaking sound. Lydia LOVES it. She follows the sound and moves around to look at it. Hopefully we can catch it so you all can see it. For now, please enjoy the cuteness!

Photos from the past few days.

Snuggling and reading The Tale of Peter Rabbit.

Aunt Carola!

Uncle Rich!

Hooray for Aunts and Uncles!

The most awesome pediatrician IN THE WHOLE WORLD. You wish your pediatrician was as amazing as ours.

Lydia's BFF Evangeline getting ready for a walk!

Family outing!

So awake during her walk.

Aunt Carissa!

Update - October 2

Sorry for the lack of update. I think about you all keeping up just from these updates and hope you don’t worry too much when we don’t post. Unfortunately, there’s cause to worry these past couple of days.

We brought Lydia home from the hospital Wednesday with plans to put her on the max dosages of her meds within a couple days. On Thursday, she had several seizures that made her airway close up and she stopped breathing. After many hours with these seizures, we started to think that Lydia wouldn’t make it through the night. As usual, our little girl surprised us. She breathed fine through the whole night and has continued to during the day today.

We’ve upped her medication levels to as high as they will go. We’ve seen some seizure activity and her breathing is becoming more and more labored.

We were thinking of bringing her to Branford Hospice Center but decided we would keep her home instead. We have been very well taken care of by visiting hospice nurses and friends who are nurses.

We don’t expect her time will be long, but she’s surprised us before. We’ve been so blessed to have these days at home, even the scary ones and we will joyfully take every moment we have with her.

We feel the presence of our God all around us, giving us peace as we await His perfect time.

Please don’t stop praying for our sweet girl.

On a happier note, we took a walk today! Our friend Sarah, her daughter Evangeline (who is Lydia’s BFF), Micah, Lydia and I went for a quick walk in the park. It was nice to do something that felt so normal. Pictures are coming!